Lupus Society of Illinois 

eChronicle February 2016
In This Issue
Quick Links
Upcoming Events

March 10
Lupus Update by 
Dr. Robert Katz 
Lupus and Heart Disease

In honor of Valentine's Day, LSI is reprinting Dr. Robert Katz's article.

Studies have shown a correlation between atherosclerosis, and specifically coronary artery disease, and lupus.  The exact cause of this relationship is not completely clear.   
Shamrock Shuffle
April 3, 2016

Kick off the spring season with the 37th Annual Shamrock Shuffle!

This 8k (4.97 mile) winds its way through the loop - starting and finishing in Grant Park.

For more information click here or contact Brianna Svec at brianna@lupusil.org.
Annual Reports

LSI's mission is at the core of our work.  Find out how the LSI has been moving the mission forward by reviewing our Annual Reports from past years.

Archived Educational Teleconferences 

LSI archives educational teleconferneces on our website here.

LSI's next teleconference is scheduled for Thursday, March 10, 2016.  Register today! 
Invitation  

You're Invited!

To become a member of the National Lupus Initiative!

A collaborative project of Northwestern University Feinberg School of Medicine and the Illinois Public Health Association Division of Health Equity.
 
To join contact Karen Mancera-Curevas at (312) 503-0251. 

MORE 
CFC #: 21759
In the middle of February, it's hard to imagine spring - but sunshine and warm weather is right around the corner. And that means so is Lupus Awareness Month and the Illinois Lupus Walks!
 
We have already begun planning Lupus Awareness Month and events are already posted. The 3rd Annual Charity Golf Outing in Memory of Stephanie Wetzel is scheduled for May 14th and once again will be held at the Urbana Country Club in Urbana, IL. This event is in memory of Stephanie Wetzel and organized by her friends and family.
 
The Illinois Lupus Walks are open as well - with a brand new look! We have changed the look of the registration website and streamlined the process to make it easier to use. We hope you agree! You can register now at:
 
Sunday, May 15, 2016
Southern Suburbs
Saturday, May 21, 2016
Western Suburbs
Saturday, August 13, 2016
Chicago (Lincoln Park)
Sunday, September 18, 2016

The Illinois Lupus Walks are a great way to raise awareness and funds raised enable us to provide programs and services at no cost to those in need. Like the Empowering Lupus Patients Educational Seminar on January 30, 2016.
 
Our first event of the New Year brought out 50+ participants to benefit from 3 presentations. Karen Mancera-Cuevas, MS, MPH, CHES presented on Lupus and Clinical Trials; Zineb Aouhab, MD presented on Lupus Basics; and a panel discussion on living well with lupus rounded out the event. I was privileged to sit on the panel alongside six of LSI's greatest volunteers: Kay & Cecil Mimms, Robertha McNeil, Kanefus Walker, Erica Collins and Tawny Smith.
 
Our next educational event will be a teleconference on Nutrition and Lupus featuring Marla Brodsky, RD, LD, BCIM. Registration is required to receive the toll free teleconference number. You can also ask Marla a question prior to the event. Click here for more information.
 
LSI continues to think outside of the box by finding opportunities to partner with local researchers on projects designed to target our mission. The African-Americans with Lupus Focus Group is one example. Together with Northwestern University and Dr. Rosalind Ramsey Goldman, we are working to identify concerns needs and interests for educating and engaging community members regarding lupus. Find out more here.
 
It's never too early to start planning for Lupus Awareness Month in May! If LSI can support your plans, please contact us!
 
Together we make a difference.
 
Charles Brummell
The Lupus Society of Illinois is working with Dr. Rosalind Ramsey Goldman and Northwestern University to identify the concerns, needs and interests of African-American lupus patients and their caregivers.  We are particularly interested in learning about access to care and support needs in the African-American community.  We invite African-American individuals with lupus and African-American caregivers for those with lupus to participate in a small focus group discussion.

For more information and to find out if you are eligible to participate, please contact Mary Dollear at mary@lupusil.org or by phone at (312) 648-6053.

Funded by the US Department of Health and Human Services Office of Minority Health
Navigator Corner 
Support when you need it

The Lupus Navigator recently received a question about anti-malarial drugs - Plaquenil specifically.

Plaquenil (hydroxychloroquine), like Aralen (chloroquine) and Atabrine (quinacrine) are anti-malarial drugs used to treat lupus. 

These drugs were designed to treat malaria and during World War II, were discover to also treat symptoms of lupus - specifically muscle and joint pain, skin rashes, pericarditis, pleuritic, and other symptoms - like fatigue and fever.
(FULL ARTICLE)

If you have any lupus-related questions please contact the LSI's Navigator for assistance or call 312-542-0002.
Making a Difference
LRI-Funded Research Pinpoints Which Infections May Trigger Lupus Flares
 
New research funded by the Lupus Research Institute (LRI) and the NIH's National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has provided unique insight into how infections cause lupus flares.
Dr. Stefania Gallucci (Temple University School of Medicine) and her colleagues Drs. Çagla Tükel and Roberto Caricchio have now pinpointed a mechanism by which a particular kind of infection that's caused by thin films of bacteria commonly known as biofilms - triggers lupus flares. Biofilms cause common infections such as urinary tract infections, ear infections and periodontal disease; understanding their role in lupus progression is key to managing the disease.
(FULL STORY)

The Lupus Society of Illinois is a coalition member of the Lupus Research institute.
There is Hope
Personal Story

Everyday I wake up and get out of my bed is a miracle. I mean this literally.  I have been paralyzed on numerous occasions, during which the only movement I could produce came from burning tears rolling down the side of my face as I thought of the painful day ahead. If someone had apprised me this would happen I would have made plain my disbelief. I would have dismissed the idea of wearing a wig at the age of twenty due to chemotherapy, of my nails becoming deformed and brittle, and of gaining so much weight I could no longer recognize myself in the mirror. However, this became a reality for me after a diagnosis of Systemic Lupus Erythematosus in 2008 and the sporadic flares that followed.

(FULL STORY)
Still Alive: Kay Mimms, Lupus Warrior
Personal Story

In our individual lives it's easy to forget how similar each of us really are. We all have relationships, delights, feelings, faults and sorrows. We all have bodies that protect hearts that beat and sometimes, whether or not we're prepared, must keep our spirits strong. 

For Kayrene (Kay) Mimms, that strength has been tested for many years. Suffering without answers through symptoms of painful joints, swollen muscles and chest pain - to name only a few - passed with no relief until the age of 59, when she was diagnosed with Systemic Lupus Erythematosis (SLE). But her diagnosis almost came too late.

(FULL STORY)
Educational Events  
Thanks to the generosity of donors and the success of the Illinois Lupus Walks, LSI is able to provide these programs at NO COST to participants.   
 
Presented by
Marla Brodsky, RD, LD, BCIM
Thursday, March 10, 2016 | 6:30pm
Registration Required for toll free call-in number

To Live With Lupus, We Need To Know About Lupus 
Presented by: Zineb Aouhab, MD and 2nd year Rheumatology Fellow at Northwestern University
Naperville Library - 95th St.
3015 Cedar Glade, Naperville IL 60564
Saturday, July 30, 2016 - tentative date
9:30am - Registration
10:00am - Program begins
Registration Requested 
Educational Event Success!
Empowering Lupus Patients Educational Seminar

More than 50 people turned out for the 8th annual Empowering Lupus Patients Educational Seminar.  Participants were treated to 2 presentations and one panel discussion.

Copies of PowerPoint presentations are available online:

Lupus and Clinical Trials - Presented by Karen Mancera-Cuevas, MS, MPH, CHES

To Live With Lupus, We Need to Know About Lupus - Presented by Zineb Aouhab, MD

The Panel Discussion on Living Well With Lupus included five people living with lupus - Erica Collins, Robertha McNeil, Kay Mimms, Tawny Smith & Kanefus Walker and two caregivers - Charles Brummell and Cecil Mimms.
Our Mission

LSI promotes lupus awareness and complements the work of health care professionals by providing personalized resources for the lupus community while supporting research.
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